Infertility Stigma: A Qualitative Study on Feelings and Experiences of Infertile Women

Background: Infertility stigma is a phenomenon associated with various psychological and social tensions especially for women. The stigma is associated with a feeling of shame and secrecy. The present study was aimed to explore the concept of infertility stigma based on the experiences and perceptions of infertile women. Materials and Methods: This qualitative conventional content analysis study was conducted in Isfahan Fertility and Infertility Center, Iran. Data were collected through in-depth interviews with 17 women who had primary infertility. All the interviews were recorded, transcribed and analyzed according to the steps suggested by Graneheim and Lundman. The Standards for Reporting Qualitative Research (SRQR) checklist was followed for this research. Results: Eight hundred thirty-six initial codes were extracted from the interviews and divided into 25 sub-categories, 10 categories, and four themes. The themes included “stigma profile, self-stigma, defensive mechanism and balancing”. Stigma profile was perceived in the form of verbal, social and same sex stigma. Self-stigma was experienced as negative feelings and devaluation. Defensive mechanism was formed from three categories of escaping from the stigma, acceptance and infertility behind the mask. Two categories; empowered women and pressure levers, created a balancing theme against the infertility stigma. Conclusion: Infertile women face social and self-stigma which threatens their psychosocial wellbeing and self-esteem. They use defensive response mechanisms and social support to mitigate these effects. Education focused on coping strategies might be helpful against infertility stigma.


Introduction
Infertility and subfertility affect a significant proportion of human beings (1). Infertility is defined as failure to achieve clinical pregnancy after 12 months of regular unprotected sexual intercourse. In general, 8 to 12% of couples of reproductive age suffer from infertility worldwide (2). According to a World Health Organization report, more than 10 percent of women are affected by infertility (1). In addition to the medical problems, infertility can cause numerous personal and social problems. It can be seen as a developmental crisis (3). Infertility can have damaging social and psychological consequences from exclusion and divorce to social s tigma that leads to isolation and psychological dis tress (4).
Although infertility affects both sexes equally, it is women who are mos t frequently blamed (5). This causes infertile women to feel guilty and threatens their selfes teem. Thus, infertile women experience greater psychological s tress than infertile men, and they are often s tigmatized for being infertile and being childless (6). Many women experience infertility as a s tigma. Although it seems that infertility s tigma is likely to be greater in developing countries, infertility has been s tigmatized in both developed and developing countries (7,8).
Infertility s tigma is associated with the feeling of shame and secrecy (9,10). S tigma is defined as a negative feeling of being different compared to others in society and being contrary to social norms (11). If infertility is ex-perienced as a s tigma, it has the potential to deprive the infertile person of social support and cause depression, anxiety and s tress (4,12), feelings of guilt (13) and relationship problems (5). It may also cause psychological dis turbance, decreased self-es teem and self-efficacy, and a tendency toward self-s tigma (14). Infertility s tigma and its related social pressures influence all the dimensions of women's lives and well-being. Qualitative s tudies can provide more in-depth unders tanding of infertility s tigma and can help develop more effective interventional s trategies. Due to the limited number of qualitative s tudies in this field, this s tudy was conducted to explore the feelings and experiences of infertile women regarding infertility s tigma.

Design and data collection
This s tudy is a qualitative content analysis conducted in Isfahan Fertility and Infertility Center, Isfahan, Iran. Women with known infertility who were under infertility treatments participated in the s tudy. The inclusion criteria consis ted of having primary female infertility and absence of any psychological disorders. Participant's likelihood of withdrawing from the s tudy was considered as the only exclusion criterion. Purposive sampling was carried out from 2019 to 2020 to ensure maximum variation in terms of age, education, occupation and infertility duration. The present article adheres to the EQUATOR guidelines of reporting research using the S tandards for Reporting Qualitative Research (SRQR) checklis t (15).
Twenty-one women were asked to participate in the s tudy of which four refused because they were not interes ted in the subject or had a busy schedule.
A private and comfortable room was provided in the center and women were free to choose the place of the interview. All the participants preferred the private room in the center for their interviews. Semi-s tructured face-toface interviews were conducted to assess the perceptions of women about infertility s tigma. The researcher used interviewing skills to provide an intimate and comfortable atmosphere for the participants and helped them express their experiences of infertility s tigma. All the interviews were conducted by the firs t author (M.T); a researcher in the field of infertility, and qualitative research. Two pilot interviews were conducted to improve the ques tion guide. Interviews were organized based on the research ques tion and the data from the literature review. The interviews began with open-ended ques tions such as "How did you feel about your infertility?", "How did infertility affect your life?", and "Did you experience any special treatment because of your infertility? Probing ques tions such as "How?", "What do you mean?" and "Please explain more on this issue" were asked to elicit further information. With the progress of the s tudy, some direct ques tions were added to the interviews such as "Have you experienced labeling because of your fertility problem?" and "Do you feel any social pressure because of your fertility problem?" In-depth interviews were continued until data saturation was reached; meaning that no new meaning unit was extracted from the interviews. The duration of the interviews varied between 30 to 45 minutes. All the interviews were voice recorded and then transcribed as soon as possible after the interview. The feelings and emotions of the participants during the interviews also were noted.

Data analysis and trus tworthiness
Conventional content analysis using the Graneheim and Lundman method was applied throughout the data collection (16). Transcription, analysis and coding of each interview was done before the beginning of the next interview. The contents of the interviews were completely transcribed. Transcripts were read several times to gain unders tanding and identify initial categories of meaning and codes. Codes, sub-categories, categories and themes were derived from the transcripts. Combinations of related initial codes were labeled to form sub-categories and categories. Finally, the latent meaning of the text and the main themes were developed until consensus between the researchers was reached and the concept of s tigma in infertile women was fully described.
Trus tworthiness of the data was determined as sugges ted by Guba and Lincoln (16). To es tablish internal validity, transcripts were reviewed immediately after they were made. Adequate time was assigned to data collection, and the firs t author had prolonged engagement with the s tudy subjects. The transcripts and codes were shared with two participants to ensure congruence between their experiences and the s tudy findings (member check). For dependability of the data, external reviewers, who were not members of the research team and were familiar with qualitative s tudies, approved the units of meaning, codes, subcategories, categories, and themes and made sugges tions that were considered in the final analysis. The external reviewer was asked to extract meaning units and initial codes of two interviews. Then the percentage of agreement between initial codes was calculated, which showed inter coder reliability (ICR) was more than 90% (17).
Finally, to es tablish the external validity that demons trates transferability, the authors provided a detailed description of the participants and their experiences, and the research design. In addition, selected interviews, along with codes and categories, were shared with two infertile women other than the participants and they agreed that these codes represented their real experiences (18).

Ethical consideration
All participants were informed of the s tudy purpose and assured of the confidentiality of their data and their voluntary participation. All the interviews were conducted in a private and comfortable room. Informed written consent was obtained from the participants that included consent to recording their interview. The Research Council and Ethics Committee of the Shahid Beheshti University of Medical Sciences approved the s tudy (Approval ID: IR.SBMU.RETECH.REC.1397.310).

Results
Seventeen infertile women participated in the s tudy. Although data saturation was reached after 14 interviews, the authors conducted three more interviews to ensure saturation of the data. The mean age of the women was 32.88 years. The average duration of infertility was 4.25 years. The characteris tics of the participants are shown in Table 1. 836 initial codes were extracted from the interviews and categorized into 25 sub-categories, 10 categories and four main themes. The four main themes that emerged during data collection were identified as: s tigma profile, selfs tigma, defensive mechanism and balancing ( Table 2).

Theme 1: S tigma profile
The experiences of infertile women showed they have perceived infertility s tigma. S tigma profile was experienced as verbal s tigma, social s tigma and same sex s tigma.

Verbal s tigma
One of the dis tressful behaviors mentioned by all the participants was verbal s tigma in the form of sarcasm, humiliation, and use of offensive terms for infertility by acquaintances.
A 32-year-old participant, with secondary education, housewife, 10-year infertility duration said: "The old people say that if someone doesn't have a child, their house is empty. They call them [OjaghKoor] (a humiliating word that means the couple's house is cold and spiritless). Some say to me "how incapable you are that you could not bring a child for your husband." Mos t participants encountered a huge number of curious ques tions from their acquaintances such as why haven't you had children yet? Do you have a problem or does your husband have any problems? These ques tions were considered offensive and annoying in the eyes of the women.

Social s tigma
The attitude of community members and their negative views toward infertility were pointed out by mos t participants. Mos t participants were reluctant to use the term infertility. They usually referred to it as "the issue", "the problem". Infertility S tigma "I do not like the word of infertility at all. I do not think it is a good word at all." (35-year-old participant, with diploma degree, housewife, 9-year infertility duration)

Same sex s tigma
Mos t participants complained about being labeled by other women.
"When my mother-in-low introduces me to others, she says: she is my daughter-in-law, she is in our family for 13 years but s till has no children. Please pray for her. She wants to hurt me; she wants to say that the problem is from my side." (30-year-old participant, with middle school degree, housewife, 9-year infertility duration) Some participants said that: "They are women themselves, they should unders tand other women's problems, and they have daughters themselves." (33-year-old participant, with doctoral degree, 1year infertility duration) Some women experienced different types of sexism from other women. A participant said: "The men in the family have more empathy with me than the women. My father-in-law is very kind and never asks a ques tion to bother me, but women like their son in law more." (32-year-old participant, with diploma degree, 1year infertility duration)

Theme 2: Self-s tigma
Sometimes infertile women internalize the process of s tigma. We could identify at leas t two elements that contributed to self-s tigma: negative feelings and devaluation.

Negative feelings
The experiences of some of the participants indicated their suffering and sadness. Repeated ques tions from acquaintances would lead to psychological dis tress. The negative feelings that these infertile women experienced were expressed as bitterness, sadness and anxiety.
"I think that infertility is a disas ter. The disease itself could be treated, but what happens in our society and the way that others treat you, it is really bad. The fact that everybody believes that it is your fault." (30-year-old participant, with middle school degree, housewife, 5-year infertility duration) Infertility and the outcomes surrounding it, including the possibility of separation and remarriage of the husband, occupied the women's minds, and many of them, despite having the support of their husbands, were afraid that their marital lives would collapse. The idea that not having a child would make their husband bored with them and that they might look for someone else always bothered them.

Devaluation
Participants believed that infertility was the reason for their incompleteness and defect. Consequently, they had a feeling of inferiority.
"I always think that, because I cannot get pregnant, cannot have children, I am lower than others. This idea really bothers me." (34-year-old participant, with primary school degree, housewife, 10-year infertility duration) Sometimes these feelings of inferiority made them transform their beliefs, and personal values and led to deterioration in their self-es teem.
"My cousin was divorced when she didn't get pregnant after 13 years. I supported her. I used to say that having a child is not the mos t important role of a woman. I did not know that I would have the same fate. " (26- These negative emotions reduced women's selfefficacy, and they were not able to control their feelings and emotions. "I became very sensitive. My brother's wife became pregnant. I did not want to see her during pregnancy at all." (37-year-old participant, with doctoral degree, 14 -year infertility duration).

Theme 3: Defensive mechanism
Infertile women unconsciously employed defensive response mechanisms when they encountered the s tress of infertility s tigma to protect themselves from psychosocial harm. Women used a combination of defensive response mechanisms, such as escaping from s tigma; acceptance; and infertility behind a mask.

Escaping from s tigma
Avoiding acceptance of their infertility, and irrational jus tifications for infertility were some of the mechanisms that participants used to escape from being labeled.

"Now that we are going to herbal therapy, it turns out that my husband is weak! I told my mother-in-law, now you see it was not my problem, but your son is weak.
(29-year-old participant, with diploma degree, housewife, 2-year infertility duration).

Acceptance
Over time, as the duration of their infertility lengthened, some participants considered infertility undeniable and tried to face it rationally and accept it as their fate.
"It could not be denied. But it has become really normal to me and I am trying to get along with it. My grandma always used to say, the life is not always in our favor, so be patient and satisfied by what you get" (37-yearold participant, with doctoral degree, 14-year infertility duration)

Infertility behind the mask
Mos t participants were hiding their infertility from their family and relatives, especially their husband's family. By remaining silent about their fertility problem, participants escaped the judgments and pitiful looks of others.
"I don't like anybody to know anything about this at all. I don't like to be looked on with pity. Whenever I'm asked when you're going to have children, I'd say I don't have time for children because I go to work. I come to the center for treatment, but I don't tell anybody" (42-yearold participant, with mas ter's degree, consultant, 3-year infertility duration) These participants always mentioned excuses such as working and being busy, s tudying or pretending to have decided not to have children when encountering curious ques tions from others.

Theme 4: Balancing
Infertile women used various factors to balance the psychological damage resulting from their perceived infertility s tigma. This balancing was sub-divided into two categories; empowered woman and pressure levers.

Empowered woman
Women endured and managed s tressful relationships using a sense of humor, modifying relationships, and ignoring the judgment of others to protect agains t the psychological pressure caused by infertility s tigma.
"I turn it into fun, now. I say that my child doesn't like me to be his/her mom. He/she would come whenever he/she wants. I won't let them continue." (32-year-old participant, with diploma degree, housewife, 1year infertility duration) By performing artis tic, social, and athletic activities, women tried to avoid negative thoughts and eliminate the pressure of s tigma, so they could bring balance into their lives.

"I always want to make others aware. I even have a page on Ins tagram and I give information anonymously.
It is more for giving awareness to the society. These activities amuse me in a way and are also good for my spirit." (34 year-old participants, with bachelor's degree, accountant, 5-year infertility duration)

Pressure levers
There are factors in the lives of participants that act as positive or negative levers and modify the pressure of infertility s tigma. Interviews showed that infertile women received emotional support from various sources including their husbands, families, peer groups, and, in a limited number of cases, their friends. According to mos t participants, husbands were the mos t important source of emotional support.
"My husband has said that the problem is with him, not me. He says all of this without putting any pressure on me." (32-year-old participant, with diploma degree, housewife, 1-year infertility duration) "In response to others, my husband says that I know myself when is the right time to have a child. Right now, my life is good, I don't need children now." (26-year-old participants, with bachelor's degree, employee, 2-year infertility duration) On the other hand, experiences of some participants showed that the behavior of their husband was not supportive, but, on the contrary, it was the source of tension for them.
"I said now that I have this problem, we can go and get a child from the orphanage, my husband objected, and he said I want a child of my own, even with another woman." (33-year-old participant, with diploma degree, housewife, 4-years infertility duration) Some participants mentioned that it is hard for others to comprehend what infertile women are going through. They believed that only women with the same problem could unders tand them.
"I would like to talk with people who are similar to me. When I talked with this friend of mine, who had adopted a child, I felt really good. We could unders tand each other pretty well. I was very happy when I came home after meeting her. I did the house works; I liked to put on makeup." (34-year-old participant, with primary school degree, housewife, 10-years infertility duration) Some participants identified their family as a source of support.
"My family comforts me a lot. They say do not have s tress. Everything is going to be alright." (34-year-old participant, with diploma degree, housewife, 4-years infertility duration) Mos t participants cited their husband's family as a source of tension and s tigma. Spousal family pressure for remarriage or divorce was one of the concerns of the infertile women.
"My husband's sis ter tells him, think for yourself while you are young. Go get remarried." (25-year-old participant, with primary school degree, housewife,

8-year infertility duration)
"They say we want grandchildren. Why don't you do something? They ask which one of you is to blame for infertility?" (36-year-old participant, with diploma degree, housewife, 1-year infertility duration)

Discussion
The present s tudy is one of the few s tudies that focuses on the perceptions and experiences of female infertility s tigma. The research showed that the concept of infertility Infertility S tigma s tigma was perceived as verbal, social and same sex s tigma. Self-s tigma was experienced as negative feelings, and devaluation. In contras t, women used defensive mechanisms in the form of escaping from s tigma, acceptance and infertility behind the mask. They try to make a balance between the sense of empowerment and pressure levers.
The participants s tated that they had been verbally humiliated by their acquaintances, being called s terile, issueless and fruitless. Other s tudies have also mentioned verbal sarcasm and using terms such as hollow, fruitless tree, dried tree and barren land (9,12,19). Curious ques tions from acquaintances were one of the concerns of infertile women that could threaten their mental health and could be associated with a wide range of psychological damages such as anxiety, depression and low self-es teem (13,20,21). Social s tigma referred to a situation in which infertile women would face discrimination from others; a different and compassionate look which was torturous to them. Mumtaz. et al s tated that women perceived more s tigma than men and that being s tigmatized was more painful than being infertile (22). Furthermore, mos t of the participants did not like the term "infertile". Psychologis ts believe that for such people, titles and labels should be used that do not imply a flaw; like using child free ins tead of childless (23).
Other women were the mos t considerable source of s tigma. It seems that sometimes women are acting agains t women. A s tudy in Niger showed that mos tly women were the target of verbal and physical s tigma from the women of their husband's family (24). In mos t societies, even advanced ones, having a child of your own is considered a great privilege (25). Motherhood and having children is the only way for women to raise their s tanding in the family and the society (26). In traditional societies motherhood is one of the important roles of women and those who are not capable of performing this role are powerless in the eyes of other women and would be humiliated (25).
According to interviews, women might internalize the s tigma and see themselves lower than other women. These women usually lose their self-es teem and are suffering from social isolation. Feelings of shame and inferiority (27,28), worthlessness and losing control, social isolation and decreased self-es teem (5,29,30) have been reported in other s tudies. Furthermore, women s tated that infertility could threaten their marriage, this has been reported in other s tudies too (5,27). Fear of divorce and separation has also been reported in Asian and African societies (5,7,9,24,31).
Goffman sugges ts that the individual sometimes initiates a process of s tigmatization inside themselves -internal or self-s tigmatization (11). Self-s tigma refers to negative attitudes created in individuals by themselves due to the conditions they have been put through. One of the factors des tabilizing individual identity is self-s tigma which seems to affect their self-efficacy (32).
People do not react similarly to s tigma. Women used defensive mechanisms agains t the tensions caused by infertility s tigma. The mos t important of these were hiding the infertility and infertility behind the mask. Silence and hiding were reactions that have been reported in other s tudies too (33,34). Goffman sugges ts that the firs t s trategy for confronting s tigma is hiding it. Thinking that the s tigmatized person will not be accepted they try to reduce the intensity of the s tigma by hiding the problem (11). However, it mus t be considered that, when individuals hide their problem, they end up facing the problem alone, which makes them more anxious. They may also use inefficient coping s trategies. The infertile women's fear that their secret might be revealed is likely to increase tension, feelings of guilt and sadness, and leave them open to psychosocial pressures (5,8,35).
All the women, regardless of age, educational level or employment s tatus, had experienced forms of s tigma. However, empowered women, regardless of education and employment, were more successful in balancing the psychological outcomes of infertility s tigma. Kabeer mentioned that self-respect, self-efficacy and psychological health could be improved by empowering women (36). Therefore, the care team should consider providing coping s trategies to women suffering from infertility s tigma.
Women mentioned some negative and positive sources that could help them to adjus t to the pressures of infertility s tigma. The mos t important source of support was their husbands. The husband played the mos t important role in defending his wife agains t the verbal and behavioral pressures of others, especially the in-laws. Results of a s tudy in Aus tralia also showed that a woman's husband and mother were the s tronges t, and the mother-in-law the weakes t source of support for infertile women (35). Inlaws were one of the pressure levers also mentioned in other s tudies (5,6) and could be one of the main sources of s tigma for infertile women.
One of the women's s trategies for creating balance was communicating with other infertile women. Peer groups have been mentioned as an important source of support for women with fertility problems. Improving social relationships through the support of their peers could increase fertility-related quality of life (37). Peer support has a crucial role in therapeutic services, that should be considered by healthcare providers (38). This can complete the management of infertility and add mental health perspectives to formal treatments.
People make decisions about their problems according to their experiences (39), so interviewing women about their experiences of infertility s tigma is valuable intself. The interviewer has a long his tory of working with women suffering from fertility problems as a faculty member of the midwifery and reproductive health department in the university. She introduced herself fully to the participants. The familiarity of the researcher with the subject of the s tudy and cultural context might have helped participants to express their experiences and feelings better. This could be a s trength of the present s tudy. The present s tudy is one of the few qualitative s tudies that have undertaken an indepth inves tigation of infertile women's experiences of infertility s tigma.
Although the qualitative nature of the s tudy means that its findings are relatively context dependent, they are likely to be generalizable to similar patient groups in similar settings. A limitation of the s tudy is that the experiences of women who were infertile but had not been referred for treatment were not evaluated. This s tudy presents a clear picture of infertility s tigma and could be a springboard for further research related to infertility. It could also be used for developing protocols for psychological and counseling interventions appropriate for infertile women.

Conclusion
Infertile women confront different forms of s tigma that can lead to devaluation and self-s tigma. On the other hand, women use different defensive mechanisms and try to make a balance between a sense of empowerment and pressure levers. Health personnel who provide services to infertile women should be aware of the s tigma experienced by these women and its influences on their well-being. Education focused on coping s trategies might be helpful agains t s tigma.